Couple of Notes:
- Mike's radiation appears to be occuring a bit earlier this week (like 11:30 am instead of noon). He should be back in his room by 1 pm to eat lunch each day.
- Also, please feel free to look at the calendar to think about dinner dates with Mike for next week (May 8-12).
- Go to: www.google.com/calendar
- Login with the email address: 185cranios (or firstname.lastname@example.org)
- Password: welovemike
- Nurse appreciation week is May 6-12, too. We could shower them with love and cookies.
Today Mike was more alert than yesterday. My mom and I arrived around 1:15 (at the same time as Cheryl) and I helped him eat lunch. He had a good appetite, ate all his lunch, 2 of Kristen’s cookies, and a bunch of Hershey’s kisses (from Getz and/or Mary).
In terms of medical details, here’s the latest. I talked to Dr. Andrews tonight. He’s planning on aspirating the cyst with a needle tomorrow. My understanding is that it’s a straight forward procedure where they just drain the big mushroom top bubble that’s pressing into the fornix. He imagines that this should bring Mike relief and possibly help his short-term memory and intense fatigue stemming from pressure on the hypothalamus. He actually said it should make mike “much better.” I’m reserving judgment. I’m tired of being disappointed and don’t need to crash again.
While surgery is scheduled for tomorrow, it’s contingent upon his having a normal temp. Mike has been spiking a fever for weeks. They stopped his antibiotics over the weekend so that they can have a clear picture of what’s going on in his blood in terms of infection. Antibiotics in the bloodstream can mask infections. None of the cultures they’ve drawn and let grow over the past week have revealed any infection, but they drew more blood today to see what they find without antibiotics clouding the picture. With that in mind, Andrews says the plan is still to operate tomorrow – unless Mike’s fever spikes over 101, in which case the operation would be postponed. If surgery does happen, Andrews would like to continue right along with radiation, possibly only missing one day to reimage Mike’s radiation mask. The geography of the tumor will have changed post-cyst-drainage, hence altering the target of the radiation. Reimaging is necessary to minimize harm to other vital structures.
Dr. Andrews told me flat out that the current plan is to keep Mike at JHN for the remaining 5 weeks of radiation therapy. I told him that I supported that plan – particularly since I can’t even think of where else Mike could be right now. I did tell Andrews that if JHN is going to be home to Michael for the next 5 weeks that it’s imperative that nurses and techs understand the importance of getting Michael up and about each day – if even just for meals in the chair. It’s not common for folks to be in that particular ward for weeks on end – so nurses might not think it a big deal if during their own 12 hour shift, Mike remained in bed. But over time, this would be really really bad for Mike. In addition to sitting in the chair, we should try to prop him up with a pillow behind is shoulder and back to make him lean on his side a bit. The last thing Mike needs is skin breakdown on his backside from being flat in the freaking bed for so long. I encourage you all to keep these things in mind and speak as mike’s advocates when I’m not there.
This morning, I got a ton of financial stuff done. I talked to Verizon and they agreed to let me change from the 700 min/month to the 1400 min/month plan retroactively. This is only $20 more/month and took a whopping $460 off of my insane $597.88 bill for last month.
I also got a call from the woman who owns Bax’s daycare. They have been wonderful to us at Haddon Learning Center and in addition to the love, care, and stability they give Baxter, it also turns out that one of the other kids’ moms is in the top level of hospital administration at Jefferson. Elizabeth (who owns HLC) talked to her a bit about our Vince situation and today the mother met me for coffee around noon at Jefferson and talked with me for an hour. She was wonderful and showed so much sympathy for our situation. Boy, would I hate to be Vince right now. As I told Elizabeth, so many of us have so much anger and frustration with Mike’s situation in general, that this bum nurse walked into a minefield.
I gave Mike a shave today, got him comfortable and put in an episode of Once and Again on DVD. When we were dating, we were such dorks about this very girlie show. We watched it every week. He’s in love with Sela Ward. Have you seen her perfectly arched eyebrows? I can’t say I blame him. It was nice to watch this dumb show with him, though I don’t know how much of it he could see or understand. He seemed to be enjoying himself, though.
I haven’t really picked myself completely up since last night’s crash. I’m starting to miss Mike a lot and there’s not as much work/logistics/preparation to preoccupy my mind from the dreadful reality that we’re in. Francine, you’re totally right about feeling better just by planning things out. I have mapped out every road and I know what we’ll do in the event that Mike is permanently hospitalized/at home with a nurse/ passes away. I’ve worked out all the details for my own peace of mind. Thanks to everyone for validating my pissed-off-edness. I can sense that you’re all right here with me. Thanks for being my safety net. I couldn’t do this without knowing that you’re behind me.